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Development of the Residual Lesion Score for congenital heart surgery: the RAND Delphi methodology
- Meena Nathan, Jane W. Newburger, Margaret Bell, Alexander Tang, Russell Gongwer, Carolyn Dunbar-Masterson, Andrew M. Atz, Emile Bacha, Steven Colan, J. William Gaynor, Kirk Kanter, Jami C. Levine, Richard Ohye, Christian Pizarro, Steven Schwartz, Girish Shirali, Lloyd Tani, James Tweddell, Michelle Gurvitz, for the Pediatric Heart Network Investigators
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- Journal:
- Cardiology in the Young / Volume 33 / Issue 6 / June 2023
- Published online by Cambridge University Press:
- 23 December 2022, pp. 977-990
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Background and Objective:
The Residual Lesion Score is a novel tool for assessing the achievement of surgical objectives in congenital heart surgery based on widely available clinical and echocardiographic characteristics. This article describes the methodology used to develop the Residual Lesion Score from the previously developed Technical Performance Score for five common congenital cardiac procedures using the RAND Delphi methodology.
Methods:A panel of 11 experts from the field of paediatric and congenital cardiology and cardiac surgery, 2 co-chairs, and a consultant were assembled to review and comment on validity and feasibility of measuring the sub-components of intraoperative and discharge Residual Lesion Score for five congenital cardiac procedures. In the first email round, the panel reviewed and commented on the Residual Lesion Score and provided validity and feasibility scores for sub-components of each of the five procedures. In the second in-person round, email comments and scores were reviewed and the Residual Lesion Score revised. The modified Residual Lesion Score was scored independently by each panellist for validity and feasibility and used to develop the “final” Residual Lesion Score.
Results:The Residual Lesion Score sub-components with a median validity score of ≥7 and median feasibility score of ≥4 that were scored without disagreement and with low absolute deviation from the median were included in the “final” Residual Lesion Score.
Conclusion:Using the RAND Delphi methodology, we were able to develop Residual Lesion Score modules for five important congenital cardiac procedures for the Pediatric Heart Network’s Residual Lesion Score study.
Design and initial results of a programme for routine standardised longitudinal follow-up after congenital heart surgery
- Sara K. Pasquali, Chitra Ravishankar, Jennifer C. Romano, Kristin Kane, Suzanne Viers, Andrea Kennedy, Nancy Burnham, Ray Lowery, Karen Uzark, Lauren Retzloff, Jonathon J. Rome, Joseph W. Rossano, John R. Charpie, Thomas L. Spray, Michael G. Gaies, Richard G. Ohye, J. William Gaynor
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- Journal:
- Cardiology in the Young / Volume 26 / Issue 8 / December 2016
- Published online by Cambridge University Press:
- 02 February 2017, pp. 1590-1596
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Background
With improvements in early survival following congenital heart surgery, it has become increasingly important to understand longer-term outcomes; however, routine collection of these data is challenging and remains very limited. We describe the development and initial results of a collaborative programme incorporating standardised longitudinal follow-up into usual care at the Children’s Hospital of Philadelphia (CHOP) and University of Michigan (UM).
MethodsWe included children undergoing benchmark operations of the Society of Thoracic Surgeons. Considerations regarding personnel, patient/parent engagement, funding, regulatory issues, and annual data collection are described, and initial follow-up rates are reported.
ResultsThe present analysis included 1737 eligible patients undergoing surgery at CHOP from January 2007 to December 2014 and 887 UM patients from January 2010 to December 2014. Overall, follow-up data, of any type, were obtained from 90.8% of patients at CHOP (median follow-up 4.3 years, 92.2% survival) and 98.3% at UM (median follow-up 2.8 years, 92.7% survival), with similar rates across operations and institutions. Most patients lost to follow-up at CHOP had undergone surgery before 2010. Standardised questionnaires assessing burden of disease/quality of life were completed by 80.2% (CHOP) and 78.4% (UM) via phone follow-up. In subsequent pilot testing of an automated e-mail system, 53.4% of eligible patients completed the follow-up questionnaire through this system.
ConclusionsStandardised follow-up data can be obtained on the majority of children undergoing benchmark operations. Ongoing efforts to support automated electronic systems and integration with registry data may reduce resource needs, facilitate expansion across centres, and support multi-centre efforts to understand and improve long-term outcomes in this population.
Collaborative quality improvement in the cardiac intensive care unit: development of the Paediatric Cardiac Critical Care Consortium (PC4)
- Michael Gaies, David S. Cooper, Sarah Tabbutt, Steven M. Schwartz, Nancy Ghanayem, Nikhil K. Chanani, John M. Costello, Ravi R. Thiagarajan, Peter C. Laussen, Lara S. Shekerdemian, Janet E. Donohue, Gina M. Willis, J. William Gaynor, Jeffrey P. Jacobs, Richard G. Ohye, John R. Charpie, Sara K. Pasquali, Mark A. Scheurer
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- Journal:
- Cardiology in the Young / Volume 25 / Issue 5 / June 2015
- Published online by Cambridge University Press:
- 28 August 2014, pp. 951-957
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Despite many advances in recent years for patients with critical paediatric and congenital cardiac disease, significant variation in outcomes remains across hospitals. Collaborative quality improvement has enhanced the quality and value of health care across specialties, partly by determining the reasons for variation and targeting strategies to reduce it. Developing an infrastructure for collaborative quality improvement in paediatric cardiac critical care holds promise for developing benchmarks of quality, to reduce preventable mortality and morbidity, optimise the long-term health of patients with critical congenital cardiovascular disease, and reduce unnecessary resource utilisation in the cardiac intensive care unit environment. The Pediatric Cardiac Critical Care Consortium (PC4) has been modelled after successful collaborative quality improvement initiatives, and is positioned to provide the data platform necessary to realise these objectives. We describe the development of PC4 including the philosophical, organisational, and infrastructural components that will facilitate collaborative quality improvement in paediatric cardiac critical care.
Improving safety for children with cardiac disease
- Ravi R. Thiagarajan, Geoffrey L. Bird, Karen Harrington, John R. Charpie, Richard C. Ohye, James M. Steven, Michael Epstein, Peter C. Laussen
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- Journal:
- Cardiology in the Young / Volume 17 / Issue S4 / September 2007
- Published online by Cambridge University Press:
- 26 November 2007, pp. 127-132
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The complexity of the modern systems providing health care presents a unique challenge in delivering care of the required quality in a safe environment. Issues of safety have been thrust into the limelight because of adverse events highly publicized in the general media.
In the United States of America, improving the safety and quality in health care has been set forth as a priority for improvements in the 21st century in the report from the Institute of Medicine. Many measures have now been initiated for improving the safety of patients at hospital, regional, and national level, and through initiatives sponsored by governments and private organizations. In this review, we summarize known concepts and current issues on the safety of patients, and their applicability to children with congenital cardiac disease. Prior to examining the issues of medical error and safety, it is important to define the terminology.
An error is defined as the failure of a planned action to be completed as intended, also known as an execution error, or the use of a wrong plan to achieve an aim, this representing a planning error. An active error is an error that occurs at the level of the frontline operator, and the effects of which are felt immediately. A latent error is an error in the design, organization, training and maintenance, that leads to operator errors, and the effects of which are typically dormant in the system for lengthy periods of time. Latent errors may cause harm given the right circumstances and environment.
An adverse event is defined as an injury resulting from medical intervention. A preventable adverse event is an adverse event that occurs due to medical error. Negligent adverse events are a subset of preventable adverse events where the care provided did not meet the standard of care expected of that practitioner.
The study of improving the delivery of safe care for our patients is a rapidly growing field. Important components for development of programmes to improve the safety of patients include the leadership for the programme, the implementation of process design based on human limitations, the promotion of teamwork and function, the anticipation of unexpected events, and the creation of a learning environment.
Much is yet to be learned about the risk and incidence of adverse events during hospitalization of children with congenital cardiac disease. Errors due to human factors, such as poor communication, poor coordination, and suboptimal team work, have shown to be important causes of adverse outcomes in children undergoing cardiac surgery, and should be a focus for improvement. Future research on evaluating causes and prevention of medical errors and adverse events in this population at high risk, and consuming high resources, is essential.
Issues of inadequate safeguards for patients have been prominent in the media, and have been highlighted in reports from the Institute of Medicine. Our review discusses research on the causes of medical error, and proposes concepts to design successful programmes to improve safety for the patients on a local level.